Being Able to See Again: My Scleral Lens Journey
Last updated: June 2023
Since 5th grade, I always had pretty bad eyesight. Though when it started to get bad, it was still quite mild. Of course, at that age, I thought it was completely “dorky” to wear glasses. I didn’t want to be bullied and called “four eyes” forever.
So, I continued to stumble blindly through life for a few years. That is, until I was finally allowed to get contact lenses in junior high. By then, my vision had gotten worse, but I didn’t have a ton of complications... yet, anyway.
Embarking on the hardest journey of my life
By the time I was 24 and my health had gotten worse 100 times over in every way, I had to start the process of topical steroid withdrawal (TSW). Topical steroid withdrawal is an iatrogenic condition, meaning it is inadvertently caused by a medication, in this case steroids. I had dealt with skin issues my whole life, but as I got older, they only got worse. I saw every medical professional and looked for answers everywhere, even at Mayo Clinic. Topical steroid withdrawal, by the end, was my answer. But I never imagined how brutal of a process it would be.
I was bedridden for a total of about 6 years, completely nonfunctional most of that time. Even the most basic activities, like bathing, dressing myself, and even eating, I needed assistance with. I looked and felt like I had third-degree burns from head to toe.
When I mean from head to toe, I really do mean 100% of my body – my eyes included. I spent a lot of days with my eyes completely swollen and crusted shut with a thick, yellow lymph fluid which was seeping out of my entire body. It was even coming out of my eyes/eyelids, the thick yellow fluid dripping down my cheeks like tears.
Starting to lose my vision
After a few years, I noticed my vision was getting much worse. I had heard from other folks going through TSW this was one of the symptoms and to not be worried about it. “It will pass,” they said. Unfortunately, in my case, that was far from the truth.
By the time I was even physically able to go to an eye doctor for a check-up, I could barely see much of anything out of my right eye. Everything was blurry, even with glasses on. Watching my eyesight deteriorate was terrifying, to say the least. I was sent to several different doctors and referred out. They told me I had a pretty big, deep scar on my cornea, as well as keratoconus and astigmatism. All of this was the perfect combination for such drastic vision loss.
Finally, after trying 4 cornea specialists to no avail, I ended up at Illinois Eye Institute College of Optometry – and my journey with my eyes changed forever. I spent 4 hours at my appointment with a wonderful doctor. She was determined to fit a scleral lens in my eye and find a treatment plan that worked for me. And she did.
When I went back for my second appointment to try on my new lens, I was beyond both nervous and excited. My vision was no longer anywhere close to normal by then. I could barely see anything clearly. My right eye was almost at the legally blind limit, and no one had been able to help so far.
Being able to see again
It took hours of practice and, no doubt, some frustration to put my scleral lens in for the first time. But after several failed attempts, I finally did it. I put the lens in and looked around the office, and I quite literally started bawling right there – with my doctor, her assistant, and several other staff and patients watching me.
All I felt was pure wonder, awe, and gratitude. Every detail in the room suddenly became sharp once more, and all the different hues of colors were radiant and vibrant again – something I never thought I would see and experience again. I was completely blown away and radiating hope and joy.
It's been a couple years since that day, but it is one I will never forget. Although I still have to deal with other conditions, including the TSW and dry eye, among others, and every day is a battle, I’m extremely grateful that I am able to see at all. The first few doctors I went to were unable to help me, and I’m glad I didn’t give up. Sometimes getting a second, third, or even fourth opinion can change your life.
Don't ever give up
If you feel that nudge to not give up and keep looking for the right one – always listen to your intuition and your heart. You are the only one that knows your truth and what is best for you. Don’t ever give up on yourself, no matter what. It is worth it. Your vision and eyes are worth it. You are worth it.
Has having dry eye helped you better advocate for yourself?